when life gives you lace for brains, blog about it

Category Archives: Uncategorized

Facebook has been doing this sneaky little thing where pictures from years ago pop up in your news feed all over again. This is what popped up in mine as having been posted 4 years ago today. Seeing this picture in my Facebook feed after all this time brought me back there. Being diagnosed was, as I’ve written about so many times, the shock of my life. But the time period just prior to it (when this picture was taken) was so strange and sad for me.

I had just returned from Mexico the week prior on my very first spring break trip ever with my dearest friend C and my new(ish) girlfriend, K. It was the very first trip K and I ever took together. I was soooo excited about the trip to Mexico! And it was of course memorable and fun, but I also struggled tremendously on this trip with fatigue, a new symptom. I was frustrated and K was too. We fought more than once about the fact that I was seemingly uninterested in exploring and really interested in sleeping. A lot. I tried to push myself because I couldn’t think of a good reason why I was so tired. Hindsight…

The day after arriving I developed a rash on my back. It didn’t seem like a big deal but it was a little itchy. It ended up being shingles though, which is kind of a big deal. Which led to this photo of the gigantic anti-viral pills I had to take. I remember looking at that pill that morning and just feeling so overwhelmed with the path I was on. How everything I was doing to feel better just seemed to take me further down the wormhole to something worse. I felt defeated and sick.

It’s hard to explain what it means to me when I look at this photo. I feel sadness and confusion and I suppose a little bit of grief and compassion for the person who took that photo.

So, I have now been on Tec(fidera) for nearly 3 months. I’m not sure why, but it seems that every blood draw brings up an ever changing array of out of range labs. It started with my creatinine and my ANC. The creatinine lab was serendipitously requested in error instead of a CBC, and came back high, like stage III kidney disease high. And my ANC came back low. Arguably the most important lab I could have drawn for baseline and it’s low and out of range. I’m not sure what to think. My body is wacky for sure.

After a slight freak out by both my primary doc and my neuro, I was instructed to move forward with beginning Tec and have my labs redrawn. These labs showed a huge increase in my ANC and improvement in my creatinine to just within normal range. Whew! My neuro, who is incredibly cautious, which I appreciate, requested that I have my labs drawn again in a month to be sure that all of my numbers were good after such a rocky start. So I did.

And just for fun, my liver numbers then decided to skyrocket. One count was in the hundreds. After more emails back and forth with the neuro and PCP, I waited 2 weeks and had MORE labs drawn. Which showed improved liver numbers, although still not completely in range. My neuro requested that I wait another month and redraw…Which brings me to my most recent labs.

Now my platelets are low.

WHAT THE FLIPPITY FUCK.

At least everything else is in range, I guess?

Aside from the never-ending lab draws, Tec has been going pretty well. I feel much more energetic than I did before which is really great. The Tec is much easier to transport for traveling so I’m also happy about that. I am more compliant with my medication so that means the treatment can actually do it’s job. Overall, going well. I occasionally still get mild flushing. This seems to happen if I’m feeling stressed or rushed and have just taken a shower. It’s happened twice when K and I are heading somewhere and we are running late. I also occasionally get intestinal upset still. It’s nothing like the horrors that I read online before starting Tec though.

Oh, and one final thing I will put here in case others search and land on this blog because I wrote about Tecfidera. Tecfidera makes my nose run. **Warning: I am about to describe my snot, so if you don’t want to read about that stop reading now 😛 So, I get this runny nose a few hours after I take Tec. Its really thin, like water and my mouth saliva also seems to thin out. I also feel my sinuses fill up with fluid to the point that I have a hard time keeping the pressure out of my ears. When it gets really bad the only thing that will clear the pressure is to plug my nose and close my mouth, then breathe out as hard as I can, puffing out my cheeks like a diver would do to clear the pressure from their ears. This lasts for a couple of hours and then goes away. I only get it a few hours after a dose of Tec and I thought I was going crazy at first. Then I googled and immediately returned searches of people describing exactly what I was experiencing. I let my neuro know and she believes me. I think. Anywho, if this is happening to you, you are not alone.

Labs are to be redrawn in February. Hopefully everything will have stabilized by then.

I was just scanned last month and once again more lesions were found and one was enhancing. I don’t get super worked up over lesions or enhancement because I feel like there is plenty of evidence to suggest that 1) RRMS doesn’t mean disease activity stops when we aren’t in relapse; and 2) MRI’s do not offer any real prediction or correlation to a person’s clinical picture. But my neuro does and she had been urging me for some time to switch meds.

After lots of research, talking with my neuro, whining, and excuse-making, I opted for Tecfidera and last night was my first dose.

i was so not prepared.

how come they never mentioned that i would first be awakened feeling as though my skin was burning off from the inside out, and that later, after worrying that something was seriously wrong and contemplating getting out of bed to check my skin for burns this feeling would subside. I would think the worst had passed and try to get some sleep. except for some reason my legs felt like they were being poked in random places with a pine needle. the itching, the horrible, ungodly, make-your-legs-involuntarily-twitch itching. i was so woefully unprepared for that at 3 am.

after benadryl and a near-sleepless night i have now just swallowed my second dose of Tecfidera. along with more benadryl preemptively. really hoping that is the key for control the itching. also, i would like to point out to any pharmacists and docs out there reading that feeling like my skin is searing off is not what i would describe as “flushing.” flushing sounds cute, like a normal reaction. this was not cute. feeling like your arms are about to turn into pork rinds as you lay there trying to sleep is not cute. it hurts, and burns, and worries the ever-loving shit out of you. just FYI…mmk? 🙂

the last 6 weeks have left me feeling a bit lost. but as a person who is well-seasoned in shitty interpersonal situations with family, i’m moving on. i still have not talked to my mom. i’m still really conflicted and upset about it but i’m doing my best to move forward. it’s not that i want to shut her out because i’m pouting and angry, i really want her in my life but she can’t give me what i need. so taking a step back for now is what feels right.

new years didn’t bring with it a litany of self-help and feverish exercise regimens. it was probably the most quiet and understated ring-in of a new year ever for me. in case you didn’t know, before my body started falling apart i was a big-time night owl party girl. i have far too many embarrassing pictures from back in the day–burning man, raves, camp-outs…thankfully my friends had the good sense to not post them on public forums. anywho, it’s really for the best that i wasn’t out partying it up for new years. let’s face it, i’m pushing my mid 30’s and no one likes a washed up party girl. not that i was ever the stiletto and mini skirt wearing type, and i still look like i’m a baby-faced college freshman (yes, i get carded). but still.

so this year, K and i watched the sun set over the pacific ocean on new years day. it certainly helps that my locale is arguably one of the most beautiful places in california.

at any rate, i am late to the game with the resolutions but there are some things that i really hope to accomplish for myself this year.

for one, i want some type of resolution to this situation with my family. i’m not sure how to get it just yet, but i want to feel ok about my relationship with them. no more guilt and anger and hurt and all of that nasty negative stuff.

second, i want to travel. that means a whole lot of things need to happen. namely, the goal is not to just become a travel OT. i want to do one better–i want to travel as an OT in a bus. i’ve put a lot of thought into this and it makes sense for us for a number of reasons:

1. its a mobile living space, which means i get to keep the living stipend the contract company gives me.

2. we don’t have to worry about finding pit-bull friendly housing as we move around the country

3. we have bills. lots of them. with almost no overhead and really good earnings we can pay off debt.

4. it’s safer than an RV, it can easily tow a car, and we can modify it any way we would like to suit our needs. our plan is to travel for 2 years, so having a small living space that works for us is important.

these folks have a really gorgeous bus that will hopefully offer us some inspiration as we plan ours. i’m scared out of my mind for sure, but there is a little voice in my head that keeps telling me i can do this, that its ok to be scared and feel overwhelmed, i will find a way. so we are in the market for a school bus, preferably one that has already been partially converted.

third, i need to get more serious about my diet and my medications. currently i follow the OMS diet and i haven’t kept great tabs on my saturated fat intake, which is a key part of the diet. so i’m thinking it’s time to get an app of some sort that i can input what i eat and track my saturated fats and proteins.

i have really struggled with the medications in particular. i don’t want to give myself shots. i don’t want to jump through hoops to get my prescription each month. i don’t want to think about pharmaceutical companies ripping off sick people like me for no reason other than they can. but i have to face it. i can’t have another 5 month relapse. this one was mild but the next one may not be.

its been a long time since i updated on whats going on with me. i think the last time i talked about school/internships i had completed my final internship and was studying for my board exams. i’m happy to report that i passed…4 months ago. since then, i’ve just been enjoying a simple life where i just work and have days off. no more studying, no more 6 days a week, no more group projects and 2 hour commutes. it has been GREAT, a much needed break from the chaos of the last few years.

i still look back on school and that final year in particular and wonder how the fuck i did it. i was stressed beyond belief. the fact that i was even able to carry on and not crack under the pressure is, in my opinion one of my biggest accomplishments. i did more than graduate, i survived the gauntlet.

but its been 8 months now since i stepped foot onto the grounds of my internship site and 4 since i passed my boards. even though i want to rest here i have to keep moving forward. i’ve given myself a fair amount of shit for not moving on faster, but when it comes down to it, its what i needed. i needed this time to clear my head, to rest my body, and to prepare myself for my future.

i’ve had a plan for the future that i haven’t shared much with others but i’m going to share it now: i want to travel as an OT. as luck would have it, my family has an RV i can use which makes things quite a bit easier and less costly. i’m really excited! most people that i have spoken with about travel were quite emphatic about needing at least a year of experience before setting out. well, i’ve always been good at winging it. i mean, how do you think i made it through school after all the bullshit i went though?! it wasn’t on good looks and charms, i can guarantee that! at any rate, my plan is to get 6 months of experience in and then head out of here. that puts me at a departure date of around march.

i just accepted an offer for my first full time OT position. i’m a mixture of excitement, relief, and fear. that’s probably pretty normal though! i’m a bit anxious about working 5 days a week and doing a long commute, but i’ll just have to see how things go. i finally (mostly) feel like i have energy again which is something i have really struggled with. its hard for me to think that i will lose that. i don’t just want to save all of my energy for a job. i want to live life!

so there you have it, i turned in my 2 week notice on tuesday which was bittersweet. i feel so at home at my job. even though i don’t like the actual work i love my coworkers. it’s really hard to leave but i have to move forward. i just keep thinking about all of the gorgeous places that await me out on the road and i know that i have to do this to make it happen. it’s still hard though.

i would like to travel for about 2 years, which means i would have 8 assignments total. i am compiling a list of places that i would like to visit. so far i have:

1) montana. in particular i HAVE to spend time in glacier national park

2) new orleans

3) maine. i’ve always had a fascination with maine. it all looks pretty beautiful

4) georgia. those islands!

5) ALASKA!!!

6) santa fe. i’m not a huge fan of the desert but i think if anywhere can change my mind its new mexico…or maybe utah.